Author(s): Stockley RA, Luisetti M, Miravitlles M, Piitulainen E, Fernandez P; Alpha One International Registry (AIR) group
In 1997, the World Health Organization recommended establishing an international registry of alpha1-antitrypsin deficiency. The objective of the present article is to describe the organisation of an international network of registries, the Alpha One International Registry (AIR), and the processes of enrolling and entering data. By the end of 2005, the registry included individuals from 21 countries (from four continents). The inclusion criterion was either phenotypes PiZZ, PiSZ or other severely deficient variants. Demographic and clinical information have been collected by a standardised questionnaire, translated for each country. Data are transferred to the AIR database at the Dept of Respiratory Medicine, University Hospital, Malmö, Sweden, either by e-mail or via two web-enabled questionnaires in HTML. All data are merged and checked for consistency and missing values. Collection of data started in 1999 and, by September 2005, data on 2,150 individual patients (1,180 male) had been submitted. Of these, 1,855 (84%) have phenotype PiZ, 181 (8%) PiSZ and 114 (5%) other rare Pi phenotypes. The mean age at inclusion was 49.8 yrs (SD = 13.3) and the majority were index cases (64.1%). The Alpha One International Registry is the largest specific alpha1-antitrypsin deficiency registry, fulfilling a major World Health Organization recommendation. The success related to the convergence of national registries into a common database creating a unique registry beyond geographic boundaries and encompassing alpha1-antitrypsin deficiency from various ethnic groups.
Referred From: https://www.ncbi.nlm.nih.gov/pubmed/17329492
Author(s): Abbott OA, Hopkins WA, Van Fleit WE , Robinson JS
Author(s): Barnes PJ
Author(s): Barnes PJ , Shapiro SD, Pauwels RA
Author(s): Barnes PJ
Author(s): Bast A , Haenen GR, Doelman CJ
Author(s): Bianco P, Robey P G
Author(s): BittmannI , Dose T, Baretton GB, Müller C, Schwaiblmair M, et al.
Author(s): Böyum A
Author(s): Brantigan O C, Mueller E, Kress M B
Author(s): Cooper JD, Patterson GA, Grossman R, Maurer J
Author(s): Cooper JD, Trulock EP, Triantafillou AN, Patterson GA, Pohl MS, et al.
Author(s): Dallegri F, Ottonello L
Author(s): Di Stefano A, Maestrelli P, Roggeri A, Turato G, Calabro S, et al.
Author(s): Di Stefano A, Capelli A, Lusuardi M, Balbo P, Vecchio C, et al.
Author(s): Eriksson S
Author(s): Holden C, Vogel G
Author(s): Huang Q, Liu D, Majewski P, Schulte LC, Korn JM, et al.
Author(s): Hyatt RE1, Farkas G, Schroeder M
Author(s): Ishizawa K, Kubo H, Yamada M, Kobayashi S, Numasaki M et al.
Author(s): Koca E, Champlin RE
Author(s): Kotton DN, Ma BY, Cardoso WV, Sanderson EA, Summer RS, et al.
Author(s): Lama VN , Smith L, Badri L, Flint A, Andrei AC, et al.
Author(s): Hogg J C, Walker B A
Author(s): Nikula KJ , March TH, Seagrave J, Finch G, Barr E, et al.
Author(s): Orlic D, Kajstura J, Chimenti S, Limana F, Jakoniuk I, et al.
Author(s): Prockop DJ
Author(s): Lagasse E , Connors H, Al-Dhalimy M, Reitsma M, Dohse M, et al.
Author(s): Krause DS, Theise ND, Collector MI, Henegariu O, Hwang S, et al.
Author(s): Finkelstein R, Fraser RS, Ghezzo H, Cosio MG
Author(s): Hellermann G R, Nagy S B, Kong, X.; Lockey, R.F.Mohapatra, S.S.
Author(s): Lopez AD, Murray CC
Author(s): Mahadeva R , Shapiro SD
Author(s): Martin GR
Author(s): Pushpakon R, Hogg J C, Woolcock A J, Angus A E, Macklem P T et al.
Author(s): Retamales I , Elliott WM, Meshi B, Coxson HO, Pare PD, et al.
Author(s): Russell RE , Thorley A, Culpitt SV, Dodd S, Donnelly LE, et al.
Author(s): Gordon B
Author(s): Gross P, Pfitzer E A, Tolker E, Babyak M A, Kaschak M
Author(s): Saetta M, Di Stefano A, Turato G, Facchini FM, Corbino L, et al.
Author(s): Saetta M, Turato G, Maestrelli P, Mapp CE, Fabbri LM
Author(s): Schrepfer S, Deuse T, Reichenspurner H, Fischbein MP, Robbins RC, et al.
Author(s): Senior R M, Anthonisen N R
Author(s): Shapiro SD
Author(s): Suratt BT, Cool CD, Serls AE, Chen L, Varella-Garcia M, et al.
Author(s): Takubo Y, Guerassimov A, Ghezzo H, Triantafillopoulos A, Bates JH, et al.
Author(s): Till JE, McCulloch EA
Author(s): Turhan AG
Author(s): Van Bekkum DW
Author(s): Knudson R J, Gaensler E A
Author(s): Wagers AJ, Weissman IL
Author(s): Wagner J G, Roth RA
Author(s): Yamada M, Kubo H, Kobayashi S, Ishizawa K, Numasaki M, et al.
Author(s): Xu J, Qu J, Cao L, Sai Y, Chen C, et al.
Author(s): Carrell RW
Author(s): Vidal R, Blanco I, Casas F, Jardí R, Miravitlles M; Committee on the National Registry of Individuals with Alpha-1 Antitrypsin Deficiency
Author(s): Costa X, Jardi R, Rodriguez F, Miravitlles M, Cotrina M, et al.
Author(s): Stoller JK, Aboussouan LS
Author(s): Seixas S, Garcia O, Trovoada MJ, Santos MT, Amorim A, et al.
Author(s): de Serres FJ
Author(s): Menezes AM, Perez-Padilla R, Jardim JR, Muiño A, Lopez MV, et al.
Author(s): de Faria EJ, de Faria IC, Alvarez AE, Ribeiro JD, Ribeiro AF, et al.
Author(s): Cruz PE, Mueller C, Cossette TL, Golant A, Tang Q, et al.
Author(s): Martorana PA, van Even P, Gardi C, Lungarella G
Author(s): Minguell JJ, Erices A, Conget P
Author(s): Nakayama K
Author(s): Neuringer IP , Randell SH
Author(s): Russell RE, Culpitt SV, DeMatos C, Donnelly L, Smith M, et al.
Author(s): Lieberman J, Winter B, Sastre A
Author(s): Popescu LM, Faussone-Pellegrini MS
Author(s): Popescu LM, Manole CG, Gherghiceanu M, Ardelean A, Nicolescu MI, et al.
Author(s): Popescu LM, Manole E, Serboiu CS, Manole CG, Suciu LC, et al.
Author(s): Mandache E, Gherghiceanu M, Macarie C, Kostin S, Popescu LM
Author(s): Gherghiceanu M, Popescu LM
Author(s): Cantarero I, Luesma MJ, Junquera C
Author(s): Cantarero Carmona I, Luesma Bartolomé MJ, Junquera Escribano C
Author(s): Zheng Y, Cretoiu D, Yan G, Cretoiu SM, Popescu LM, et al.
Author(s): Galiger C, Kostin S, Golec A, Ahlbrecht K, Becker S, et al.
Author(s): Zheng Y , Cretoiu D, Yan G, Cretoiu SM, Popescu LM, et al.
Author(s): Zheng Y Bai C, Wang X
Author(s): Popescu LM, Gherghiceanu M, Suciu LC, Manole CG, Hinescu ME
Author(s): Zheng Y , Li H, Manole CG, Sun A, Ge J, et al.
Author(s): Popescu LM, Gherghiceanu M, Suciu LC, Manole CG, Hinescu ME
Author(s): Hinescu ME, Gherghiceanu M, Suciu L, Popescu LM
Author(s): Suciu LC, Popescu BO, Kostin S, Popescu LM
Author(s): Díaz-Flores L, Gutiérrez R, García MP, Sáez FJ, Díaz-Flores L Jr, et al.
Author(s): Bani D, Formigli L, Gherghiceanu M, Faussone-Pellegrini MS
Author(s): Faussone-Pellegrini MS, Bani D
Author(s): Luesma MJ, Gherghiceanu M, Popescu LM
Author(s): Ceafalan L, Gherghiceanu M, Popescu LM, Simionescu O
Author(s): Manole C G, Cisma ÅŸiu V, Gherghiceanu M, Popescu LM